FAQ/Help |
Calendar |
Search |
Today's Posts |
|
Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
Reply |
|
Thread Tools | Display Modes |
02-25-2011, 05:20 PM | #1 | ||
|
|||
New Member
|
Hey everyone,
I'm new here. I have MuSK+ refractory MG...meaning it does not want to be treated and is very stubborn! I'm on CellCept right now, have been for 10 years. Mestinon does nothing for me. I just tried Cyclosporine and felt like I was being poisoned. Stopped that yesterday and feel MUCH better. I've tried IVIG, didn't work for me. I was getting plasmapheresis every 3 weeks for the last 10 years. I don't have a port or fistula, so they used my veins. It's like it all of the sudden stopped working. My neurologist suggested Prograf, but I'm allergic to azithromycin so I can't take it. My next step is Rituximab (Rituxan). Any suggestions of other treatments? Thanks! Kerri |
||
Reply With Quote |
02-25-2011, 07:11 PM | #2 | ||
|
|||
Member
|
I'm also MuSK positive X12 years and was refractory on CC, pred and IVIG. I had high dose cyclophosphamide (cytoxan) therapy in Nov. I am now symptom free. It is also referred to as an "immune system reboot."
Please examine the risk factors for PML with Rituxan. It is especially important since you've taken Cellcept. My neuro also offers pulse doses of Cyclophasphamide if you don't want to go for the immune system reboot. That might also be an option for you. Good luck. |
||
Reply With Quote |
02-25-2011, 10:06 PM | #3 | ||
|
|||
Member
|
Kerri,
Welcome to the forum!! I'm sure you'll find lots of helpful people on the message board... Rachel
__________________
You never know how STRONG you are, until being STRONG is the only choice you have!
|
||
Reply With Quote |
02-26-2011, 09:33 AM | #4 | ||
|
|||
Member
|
Hi Kerri - glad you found us! Great folks, lots of info and support.
|
||
Reply With Quote |
02-26-2011, 11:38 AM | #5 | ||
|
|||
New Member
|
Quote:
Hey! Thank you for the info. Do you know if Cytoxan has any relation to cyclosporine? I couldn't handle that...I swear I had every side effect. I've heard of PML...I didn't realize taking CellCept added to the risk. I will ask my neuro and check it out. Thanks so much for the info! Kerri |
||
Reply With Quote |
02-26-2011, 04:14 PM | #6 | ||
|
|||
Member
|
No, they are completely different.
Yes, Cellcept itself can cause PML. It has a blackbox warning. In my case, I decided I didn't want to compound the risk. Quote:
|
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
Hippocampal scelerosis in refractory temporal lobe epilepsy associated with gluten | Epilepsy |